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scared

tbone
Posts: 8
Joined: Nov 2002

I went in for routine xray,they said it was abnormil,got a ctscan and they said it was a mass about one centimeter.I live in Michigan,I started looking on the net for best cancer centers.came up with lee moffit in florida and my wifes insurance covers that place.I'm52 years old with the best 5 year old grandson in the world,he needs his papa for awhile longer.Does anyone know about the moffit center,ps I don't smoke,seems that is the first everyone wants to know.

bobz1
Posts: 50
Joined: Apr 2002

HI Scared, Im a 10 year Lung Cancer suvivor.(Both Lungs). So I know how it feels to be scared. But as you can see I still am here to takl to you. The word CANCER is no longer a death sentance. It is becomeing more an more treatable. I know exatley how you feel right now. Find a good Doctor and let him do what he is trained to do. If you feel like you need to talk to some one, you can call me at (561) 965-2033 Im not to good at typing...Ill pray for you, Bobz1

jwin
Posts: 4
Joined: Nov 2002

tbone, I thought you were in the chat room last night and I could not communicate, so I will reply like this hope you get it. What has your doctor said??? Yes this is very scarry!! But, I believe it can be beat from all that I have read. My husband was just diagnosed last week, so, we are scared too!!! He will have to beat this thing, cause, I can't imagine anything else~ He is my WHOLE world!!!!!!!!!! Sounds like you will have to beat it too, for that grandson!!!!!
Sandy (jwin) email address jwinberry@charter.net

tbone
Posts: 8
Joined: Nov 2002

hi sandy,I'm still learning how to navigate web page.I just got a call from the H.Lee Moffit cancer center in tampa fla.They are having my primary care doc send the raidoligest report to them,then they are going to call me in the moring and tell me when my appt. will be.I'm thinking they want to see the how fast I need to get there,stze of mass and location.I've talked to alot of people that have given me hope.My wife did two audits this week one in ohio and one in misouri,both had lung cancer suvivors working there.I hope the moffit center is as good as I have heard.I don't know how good I would be in a chat room I'm not a typist.bbbbut I want to talk so keep it up,your kind words do help,I just know your husband will beat it,never give up,I'll pray ror him and for comfort for you...Terry(tbone)

ksaishanker
Posts: 4
Joined: Oct 2002

I feel you are getting scared, for this is the way I felt when they diagnosed a 4 cm mass on my right lung. I do not know of moffit center but want to share the following to make you feel better. I am 55 and have a 4 and a half yr old Grand son. The tumour has been removed and I am doing ok now. I even know of 10 to 12 yr. survivors. If your tumour is only one cm. and the nodes are not affected with no spread to either liver or adrenol or brain ( which in your case is very unlikely) your tumour will be operable and it would be a CURATIVE SURGERY and you will be there for your GRANDSON much longer than you want to be.
Best
Sai.
saishanker_in@yahoo.com

tbone
Posts: 8
Joined: Nov 2002

Hi Sai,your words are very encouring,how long ago was your tumour discovered?how was the recovery after surgey?did you have to get cemo or radi.?are you on a special diet?I hope everything goes well for you. Tbone

ksaishanker
Posts: 4
Joined: Oct 2002

Hi,
My tumour was diagnosed in April,2002 by a routine X-Ray. Got it removed in April itself at Birmingham. On my return to India went through 4 cycles of chemo as adjuant therapy.( The Oncologist at UK did not recommend any chemo. He said it was a curative surgery and that I won't need any further treatment. But my Oncologist at India wanted me to go through this as a preventive measure. I have been taking review X-Rays every 3 months. So far so good.(Touch Wood).So in my opinion you may not need any chemo or radiation. God bless you. Best
Sai

tomo
Posts: 14
Joined: May 2002

Hi Tbone -
Its ok to be scared - so am I but I try not to show it too much. I'm 62 and am stage 4 NSCLC. We live in RI and I was diagnosed in January 2000 - that's 23 months now. My original tumor was about the size of a "grapefruit" and I've been through four differenct forms of chemo, not counting the experimental drug - Iressa - I take now.

Don't know a thing about the Moffitt center in FL, but my wife and I also have a condo in Jupiter, so I had to go through the same thing you are going through now about approved centers.

Won't go into all that now but will ask if you are a veteran of Vietman? If you are you could be entitled to compensation if you act right away. I finally got mine in the mail today.

You can reach me direct at xxtomo@aol.com I will add you to my prayer list and ask you to do the same for me. Hang tough, bud.
Tom O

tbone
Posts: 8
Joined: Nov 2002

Hey tom O,your on my list for sure,and thank you for your service.No I did'nt go to nam,they sent me to korea 69 thru 71.I have a lot of friends that were afected by agent orange.We have a couple of lots and a trailer in new port richy.I was called today with my first apointment at the Moffit center, it's dec. 18.I might go down a week early to get the lawn mowed and things cleaned up.sure puts a damper on xmas.guess I'll have to take my computer so I can talk to everyone.Well I'm going back to sleep,your words realy helped thanks.

julieann
Posts: 6
Joined: Apr 2002

Tbone, I'm sorry you're going thru this difficult period. If this 'abnormality' is found to be cancer -- you'll become very familiar with waiting. Try to remember that you're just beginning this journey - you don't even know where you're headed yet, nor the way you'll get there (there are so many options/trmts available!)! ..and no one really knows the destination or timetable!! Try NOT to anticipate the worst and enjoy your holidays even more than ever before. (That grandson of yours will show you the way).
I am 48 and was diagnosed with NSCLC in Jan. 2000 and have continued to survive & thrive! (My story sounds like a repeat of Tomo's, who also posted to you.) I know how dark and bleak things can seem when you face the unknown... but as you get answers, and plans to consider, from your Doctors you will feel better and move forward.
I will be thinking of you and praying that this mass can be 'easily' treated. As mentioned before; it sounds like you've discovered this early and there are a lot of us out here to give you support.
Take care. --Julieann

tbone
Posts: 8
Joined: Nov 2002

Hi Julieann!your kind words are very encourging,you sound very strong I'll gain strength from reading words from people like you.I'll keep everyone posted on how I;m doing and you will be in my prayers Julieann,again thank you Tbone

antsynancy
Posts: 17
Joined: Apr 2002

I also have lung cancer and live in Michigan. From what I understand I have one of the best lung cancer surgeons in the world. He was recruitted here from Boston, and everyone I talked to said we are lucky to have him because he could go anywhere in the world to work!!! He is in Jackson and his name is Dr. Kulkarni. I was diagnosed with nsclc in January of this year. Surgery was performed in March and I had stage 1, didn't have to have chemo or radiation. I would certainly recommend my doctor to everyone. email me if you want anymore info about my doctor. bushwacker2002@modempool.com

Nancy

betty2
Posts: 91
Joined: Apr 2002

Hi T-Bone, I just read your message, I know it was back in Nov. when your Lung Cancer was discovered. You are so lucky that you went for a routine x-ray. I too had lung cancer once in my left lung in 1987 and again in my right lung in 1991 (2 diferent kinds of cancer)I went to the Dr. because my feet were swelling, never dreaming I had lung cancer. I had no other symptoms, and I didn't know that swelling feet was a symptom. They removed 1/2 of my left lung and a little better than 1/4th of my right lung and I have been clean ever since 1991. I had no treatment at all. So you see lung cancer doesn't have to be a death sentence. I'm very much alive and well. I would love to hear from you to see how you are doing with your surgery and treatments (if you have any) Try to think positive, thats what keeps you going.
Betty Jones jodnns@aol.com

billcole
Posts: 1
Joined: Mar 2003

I too, have just been diagnosed with lung cancer and am currenlty awaiting a surgery date. I don't seem to be able to become affected by the whole experience. Somehow, that bothers me. I know how extenseive the surgery will be and the risks associated with such an invasive surgery, but I find myself more concerned with day to day business as well as taking time to update my Will, a living Will, prepare an anatomical donation, etc. . .in case something goes wrong duing surgery. I have yet to tell my sister as she is overly emotional and find myself a little perturbed that my brother insists on being here for the surgery. I feel invaded by the emotional responses he and the few people I have told seem to be forcing upon me. Has anyone had this experience?

RER
Posts: 3
Joined: Apr 2003

Hi darling,

My husband was just diagnosed with stage III-IV Lung Cancer that was metastisized to the lymph (where they found it initially) and the liver as well.

He is a healthy, asymptomatic, well nourished active male, age 60 (I am 37). We have a wonderfully intelligent and supportive 10 y.o. son.

His Dr.'s have been supportive inasmuch as someone who screws his face on to tell a man he has 10 months to live can be but they share an arrogance and ego rampant in the profession that believes because they do not hold the cure, that the cure does not exist(!).

The more interesting thing that we have found since discovering his cancer three weeks ago (St. Patrick's Day was the biopsy), we have found that existing drugs that may have a positive effect on THIS KIND of cancer based on their behavior toward SIMILAR KINDS of cancer, are not utilized in most clinical trials - because their patentability is less lugrative than reinventing the wheel (i.e. finding new drugs)- or prescribed by MD's (who are well within their authority to prescribe legal meds for alternative purposes) because they are outside the NORM (customary treatment that insurance companies aspouse to) (!).

We are utilizing a combination of efforts that lend themselves to eachother (if they are not contraindicative they do not hurt!), many of which the MD's who have had little increase in effectiveness of traditional treatments are reluctant to prescribe unless you are a demanding ******* for your own benefit.

Bottom line: Get your hands on all the internet info you can regarding your type of cancer, its survivors and cancers that spread similarly to yours (i.e. metastisize in similar areas).

Treatments that positively effect non-primary areas of disease are very interesting to MD's who are willing to be on the cutting edge of YOUR PERSONAL healing. Along with other treatments that might not fall into the generally accepted prescribed treatment.

I do not believe that the answer is necessarily somewhere in the "near future" I believe it may also be right here, right now, we just have to search to find a needle in a haystack.

Eat your wheaties, get some rest, take some deep breaths (for about 20 minutes at a time) and seriously consider a Macrobiotic diet/philosophy to keep you strong and healthy while you deal with this mentally, emotionally, and you prepare to do more research, being pushy and demanding ALL THEY WAY, than you ever thought you were capable of. Giving your body the opportunity to fight NOTHING BUT THE CANCER by limiting your diet from all toxins (macrobiotic, again) and putting your head on right, inspite of what your doctors may say that is negative is the lynchpin to your longevity.

The longer you live, the longer you will live; just clear your mind of all the doubt and crap, get your financial affairs in order (within a 1 month period of diagnosis - after that say "screw it" to mentally beating yourself up about what you should have done to protect your family, etc. - and get on with the most important thing at hand... YOUR HEALING.

If you are a major savior for other people, keep the life saving more close to home, devote yourself to yourself first and then spend great positive and happy time with your family.

Be honest but positive with the young ones. It will only reinforce their own resolve to see you as a positive role model.

If your bride is scared, screw her head on right and let her be your bulldog; allow her to take no crap and not spend a whole lot of time making other people feel better about your (family) situation. Let her help with your information quest and your healing (thank her a lot, she will appreciate it).

Let her be tough... in front of everybody else.
Let her be a basketcase... in front of you, if she needs to.

As a wife I know that the stress of being the rock, the research asssitant, the cheerleader, the sounding board and the one faced with the prospect of having my life-mate ripped from my midst impossible to get my arms around, otherwise.

Be your own advocate, let those around you be bulldogs, if anyone errs on the side of over-zealousness, give them a trophy, at least emotionally.

Best of luck and keep in touch!
Best,
Maura Elizabeth a/k/a Bob's Wife

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